Sunday, December 06, 2009

Home - and loving it

Well folks, I made it through 9 doses of IL-2 this round, breaking my record of 7. As usual, this experience was not the same as either of the others; it's always different, which is really funny given that the protocol is so unvarying.

We got a late start with doses, in spite of my best attempts to get us there in time for the 2pm dose. We first have to go to Dr. O's office in a bldg about 5 min from the hospital, for bloodwork at 7:30 and to see him at 8:00. We ended up arriving at the office closer to 9 both of the first two cycles. First you have to go through registration where they verify your insurance and info, and give you a patient bracelet. Patient bracelets are de rigeur for any outpatient tests, procedures, etc. but are the same as the inpatient bracelet to at that point I am properly "tagged" to be in the hospital. This past Monday Jim and I pushed ourselves to get on the road early enough to if not be there at 7:30, at least make it close. I drove since I know the landscape a bit better by now, and when we arrived, he took the car to the garage while I went inside for regi, figuring we'd meet up in Dr. O's waiting room on the 10th floor. Much to my surprise, the lobby was full of people, in all of the seating, standing around, leaning on walls, etc. Hm, maybe they are all here for a class, I thought as I approached the reception desk. The receptionist asked me to sign in. At that point I noticed that I was signing at the top of a page, she was holding the previous page, and she was only maybe a quarter of the way through that page. I knew I'd better find a seat because I would be in that lobby a while (25 min in the end). Eventually I learned that most of the folks waiting were chemo patients who were scheduled for treatment on the 11th floor that day. Usually they come in, sign in with the receptionist, and she gives them a bracelet that has already been printed for them, so that they can go directly upstairs. The frequency of their visits allows them to not have to register each and every time they are there. BUT! On this particular Monday morning one of the regi ladies didn't make it in to work. All of the day's bracelets were printed and ready to go, in her locked desk drawer. Of course they couldn't find another key that would open the drawer. Most people waiting were of a similar attitude as mine, thinking "oh well... I'll get upstairs late but they will have heard why and will understand it's not my fault." A few people were freaking out legitimately, and a smaller few were kicking up a fuss, asking to talk to a supervisor, etc. When I finally got into registration, I told the rep that it looked like today was providing them an "Opportunity" to improve on one of their department's processes. He laughed and agreed.

So we got upstairs, then had to wait awhile to get my labs drawn - they do this after inserting my port needles, which helps me to be ready to go at the hospital. After that we waited some more and didn't get to see the doctor until after 9:30. He explained that he wasn't sure whether it would be a good idea to treat me again and had actually consulted with the doc who had started the HDIL-2 program at Ohio State. (Wow! That's kinda cool.) The reason for his hesitance was this... the liver mets were all stable. The ovary met was stable too. But the mesentery met had grown, as he'd told me over the phone the week before. This is where I got confused, as I had never been told about the mesentary met until these last scans were in and it was mentioned in comparison to my September scans. It turns out I have met in the middle of my abdomen, not far from where the omental lymph node was removed in Aug of 2008. So this thing has grown, but, I have also had two immunologic reactions to the IL-2 I've received this far; 1) the hyperthyroid, and 2) my eosinophils have been elevated. He thinks that they are causing the mass to appear larger, when in fact they will cause it to shrink. So this maybe good news after all, and made the docs agree that more IL-2 is in order.

We said goodbye to Dr. O, and made our way to OSUMC, arriving in admissions about 11:30. As usual our wait was short, and were being taken up to a room. For the first time, I got a private room immediately, so I was able to get settled in right away, knowing that we wouldn't be moving again. So for the first time I got to put up the motivational posters that I made prior to my first cycle, along with a beautiful poster that all of the Monahan cousins made for me in secret on Thanksgiving. As soon as I get things on my new phone figured out, I will download a photo I took of the poster in my room, or else take a snap of it here. It is gorgeous and every one of the medical folks who came into my room commented on it, so I got to be proud of our family's kids over and over, even one nephew who couldn't be with us on Turkey Day but who was represented on the poster anyhow.

So then we sat, and we waited. We waited, and we sat. We met our PCA, RN, NP and housekeeper. Jim and I both napped. Why all the waiting? They needed the doctor to sign off on approving the treatment to begin, before pharmacy would mix and send my first bag. Needless to say, that didn't happen in time for the 2pm dose. They couldn't get in touch with Dr. ____ (whoever was attending that day) to sign off on the order. She didn't actually sign it until sometime in the evening, when the 10pm dose was starting to look questionable to me. Oh well.

We started at 10pm Monday and I took 9 straight doses. After about 6 the NP would ask me each time, "are you ready for the next dose?" After dose 9, I felt pretty much like "stick a fork in me, I am DONE." I had rigors 7 of the 9 doses; they weren't as bad as the ones I'd had in cycle 1 because I recognized them coming on sooner than before so I was able to get my demerol sooner. But they still exhaust a person, and I was always worried that they would come on sooner than I would recognize them, or that the nurse would not be available right away, or something. I didn't eat while I was there; I had no appetite and the food was not appealing. Plus, my tongue and mouth dried out quite badly, so when I did taste food, it hurt to pass through my mouth. This side effect was bad enough that I actually asked for Magic Mouthwash which makes me gag just about every time I take it. It helped a little; being off treatment and out of the dry hospital air helped more. I had diarrhea again, though that has improved significantly since arriving at home. So after 9, when the NP said, "do you want to do the next dose? It's up to you" I realized that she meant it. I initially told her okay but then discussed it with Jim and he backed me up on my decision to stop. I kind of felt like I wasn't seeing effects that made me feel like additional doses were being beneficial, instead just an accumulation of the toxic effects. I discussed it with the NP and she was really cool about it, agreeing that we'd done well this time but that there was no issue with not continuing. That was on Thursday afternoon; on Friday morning after having not received 2 doses I was already starting to feel more "with it". And for the record, I didn't receive any Ativan this time; I didn't know I'd gotten it last time until long after my hospital stay. So while I felt 'out of it' and did sleep a lot, I always had the sense of time passing this week. On the other hand, the last cycle is just a blur of me being sleepy and sick sitting up in bed, then me being sleepy and sick laying in bed with nobody letting me sit up. At that time I really didn't understand just how low my blood pressure had gotten, so I didn't comprehend that my desire to sit up in bed could have disastrous consequences. Ah well, it turned out fine and was better that I wasn't aware.

Friday morning; the fellow on the floor told me that they would be working on my discharge papers but I probably wouldn't actually leave until about 2 pm. That was okay with me and Jim. This doctor had made me laugh sarcastically back on Tuesday when we met. She assumed I'd had the Monday 2pm dose and when I told her that I'd started Monday at 10pm, her reply was "Oh, you arrived too late for the 2?" Imagine her surprise when I told her "no, I was here in this bed but Dr. ___ couldn't be found to sign off until that evening." In Your Face, lady! HA! She probably didn't mean anything by her question and I answered her politely but felt a bit vindicated inside, petty person that I am. Then the NP came in to talk, discussed what she'd be giving me RX for (magic mouthwash and a lab draw for Monday). And then we waited... had lunch, napped again, kept being told "we're just waiting for final signoff" and waited some more. I broke down that morning and turned on the TV, the first time I'd done so all week. When I started to hear hub-bub in the hall I realized by also consulting the clock, that they were doing "report" at shift change. It was a bit before 3 and I knew better than to check with the desk at that point. Once it quieted down, Jim went out personally to the desk but everyone ignored him. So weird... FINALLY when I hit the call button to ask about my papers, one of the nurses came flying in with them. He had some excuse that sounded like "the NP didn't sign off and we can't track HER down". Not his fault; I'd met him in December but he never cared for me during this stay. But finally we were on our way, after a slow start caused by me giving Jim bad directions to the pickup area. In the end we arrived in Cleveland close to 8:30 so we picked up the girls from their grandparents' house and headed home.

Jim was again wonderful company and made me feel more comfortable by his very presence in the room. He discovered that a cot brought into the room is actually more comfy than sleeping in the recliner, so he was able to get some good sleep while we were there.


Carol Wulff said...

hey Liz....I'm missing you at work. You're amazing with all you are tolerating! Jim sounds like an awesome man and I'm glad he made your whole journey a lot more bearable. Know that I'm thinking of you and I'm very proud of you considering all that you've been through. I bet your girls hugs made you feel 100% percent better! Take care and my prayers are with you my dear.

Doris Zajec said...

Hi Liz,

What a great blog. Thanks for sharing it with me! Besides it being nice to keep up with what's going on and how you're fareing, I am also enjoying your writing! You have a great style - what talent!! Perhaps someday we'll be reading a best seller by Liz Monahan! By the way - it was nice seeing you yesterday. You looked great! I'm so glad all is going well. I'll be keeping you in my prayers!